Transforming Health Care through Innovative and Impactful Research

Dementia is the loss of cognitive function, which disrupts a person’s daily life. There are several types of dementia, with varied symptoms, including Alzheimer’s disease (AD) and frontotemporal degeneration (FTD). While dementia has a profound effect on the estimated 6.5 million individuals in the U.S. living with the disease, it also has a tremendous impact on family and friends who step into the caregiver role to assist their loved ones with daily activities.¹ Katie Brandt, a consumer peer reviewer for the Peer Reviewed Alzheimer’s Research Program (PRARP), is a dedicated daughter, wife, mother, and one of an estimated 11 million caregivers providing assistance to loved ones living with dementia.¹ Katie utilizes her experiences as a dedicated caregiver in helping others navigate the challenges that come with caring for a loved one with dementia.

When Katie was 29 years old, her life took an unpredicted turn when her husband, Mike, was diagnosed with FTD. Following this diagnosis, her mother passed unexpectedly, and shortly afterward her father was diagnosed with AD. This left Katie as a caregiver not only for her husband, but for her father and infant son as well. She faced this new life head on and was committed to giving her husband, son, and father a great life. Katie left her career in the child welfare industry, lost personal connections, and faced financial hardship – a common reality for many individuals that assume a caregiver’s role. In this new position, Katie was actively educating herself about resources to most effectively help her husband and father. In 2012, Katie’s husband passed. The grief she felt from losing him and her mother, as well as caring for her father, fueled her passion to give back.

Katie contacted the Association for FTD (AFTD) with the goal of actively helping the dementia community, and as a result, the AFTD featured her family’s’ story in their annual campaign. She has volunteered as a support group facilitator with the organization since 2012. The in-person support groups transitioned to a virtual platform during the pandemic, and they presently meet weekly online. Katie also approached Dr. Brad Dickerson, the director of the Frontotemporal Disorders Unit at Massachusetts General Hospital (MGH), with the desire to become a consultant. Katie started as a consultant and donated her husband’s brain for research, with the goal of creating a brain donation portfolio for the FTD community. She worked to develop educational materials for brain donation and connected with fellow caregivers. Dr. Dickerson then offered Katie a part-time position in the lab, which she accepted. Currently, Katie serves as the Director of Caregiver Support Services and Public Relations through the MGH FTD Unit. In this role, Katie oversees caregiver research studies, caregiver education initiatives including a webinar series, and fundraising for the FTD Unit.

In 2017, Katie was nominated by the MGH FTD Unit to join the National Alzheimer’s Project Act (NAPA) Advisory Council on Alzheimer’s Research, and she was appointed to the caregiver seat. During the two years Katie was part of NAPA, she heard the voices of families across the country living though a dementia diagnosis and met numerous experts that genuinely cared about the individuals living with dementia and their caregivers. This illustrated the impact her voice and story could have on the dementia community.

“As a wife, a daughter, I had experience,” Katie said. “I was drawn to the program. I could be that different voice in the room with other researchers to highlight things they wouldn’t think of.”

Katie’s passion for caregiver advocacy and interest in policy drew her to the Congressionally Directed Medical Research Programs. Katie is a proponent of community engagement, something that the PRARP emphasizes. Her years of personal and professional experience showed her the importance of including consumer advocates, such as herself, in the review of grant applications to help bridge the gap between the investigators, and to better engage the dementia and caregiver community.

In Katie’s words, “Participating as a peer reviewer for PRARP is meaningful to me because it has provided me with the opportunity to honor my father, a Veteran living with dementia due to Alzheimer’s disease, who is no longer able to speak for himself. It also gives me the opportunity to hope that the cure for Alzheimer’s and related dementias is not so far from the care of today. When I read proposals that have innovative approaches to unlocking the secrets of these devasting neurodegenerative diseases, it makes me feel as though we are gaining momentum, bringing us closer to the finish line for treatments, a cure, and prevention.”

“I have immense gratitude for the clinicians and scientists who have dedicated their professional lives to this essential work,” she continued. “I am proud of the small part that I am able to play as a reviewer who can speak to the potential impact that a positive study outcome may have for persons living with a diagnosis, caregivers, and families. I am honored to be a PRARP reviewer and look forward to the next opportunity to raise my voice for those walking the journey of a life lived with dementia.”

Her lived experience, advocacy work, and career give Katie a unique perspective which she generously lent by contributing invaluable insight as a fiscal year 2022 consumer peer reviewer for the PRARP, reviewing research applications alongside scientific research medical experts.

Reference:
¹Alzheimer’s Association. 2022 Alzheimer’s disease Facts and Figures: Special Report More Than Normal Aging: Understanding Mild Cognitive Impairment. Alzheimers Dement 2022:18. https://www.alz.org/alzheimers-dementia/facts-figures